I Wanted to Know What Other Patients Had Experienced

By Kay Zakariasen | October 15, 2011
Last Revised on May 2, 2014

Dr. Elizabeth Kavaler and Kay Zakariasen

Dr. Elizabeth Kavaler and Kay Zakariasen

My own experience with trying to get help led me on a quest to learn about the nature, benefit, harm, and alternatives to standard urological treatments for Interstitial Cystitis/ Bladder Pain Syndrome (IC/BPS) (previously called Painful Bladder Syndrome/Interstitial Cystitis Syndrome (PBS/IC).)

I had one bladder infection, which cleared up with one antibiotic, and then had no symptoms. Unfortunately, a gynecologist’s referral to a urologist and two more opinions convinced me that my urethra was “too narrow” and would have to be dilated for the rest of my life. I was told, “You’ll be fine.”

I had 10 dilations, one about every six months for five years. Then I suddenly had the feeling that I had to urinate—desperately—but no infection was detected. I also experienced severe intestinal pain after eating.

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I began to wonder if the treatment I had was the cause of my chronic and unbearable symptoms.

I started reading the medical research. Most of the urological literature focused on dilation, the standard treatment for nine decades, and on hydrodistention and instillations of chemicals. I found only two articles — one titled “The Rape of the Female Urethra” — that were critical of standard treatment. The other article, “Ineffectiveness of treatment of urethral syndrome in women,” concluded that “the less we do to these patients the better off they are.”

In 2003, I told my story to my urologist, Dr. Elizabeth Kavaler. She had similar misgivings about several of the invasive treatments she heard about from patients every week. Together we decided to do an online survey, to find out about other women’s experiences. Within weeks we had 750 responses, which quickly grew to more than two thousand.

Dr. Kavaler’s team analyzed the survey data, and Jennifer Hill, M.D., authored the article publishing our findings. Dr. Hill and I wrote an article for the National Women’s Health Network newsletter.

The women who responded to the survey wrote about having dozens of trial and error surgeries – combinations of hydrodistentions, instillations, dilations, Botox injections and for some, removal of bladders. They wrote about the pain and complications from the treatments and about having continuing symptoms. The survey results showed that the outcomes patients were experiencing did not justify the surgeries and invasive treatments. The treatments were not working.

In 2013, Dr. Kavaler and I conveyed our urgent concerns and questions in a letter to three committees of the American Urological Association (AUA). You can read the letter in full here. In it we emphasized the invasive nature of the treatments and the resultant problems, as well as the ethical questions that arise from consideration of the benefit-to-harm ratio of those treatments. (We hope the letter will also serve as a template for how patients and doctors can collaborate to bring about changes in treatment for other diseases.)

We also raised the disturbing issue that the very treatment of IC/PBS appears to be causing other diseases in patients, because of the unnecessary use of antibiotics which accompany unnecessary surgeries. (For more information, see Missing Microbes, How the Overuse of Antibiotics Is Fueling Our Modern Plagues by Dr. Martin J. Blaser.)

And we stated that the treatments for IC/PBS are unethical, not least because urologists now disagree about the very diagnosis and whether symptoms are indicative of one or several diseases. Moreover, many of the symptoms can be treated non-invasively. (Our letter to the AUA includes patients’ testimony about years of painful and ineffective treatments, as well as testimony of alternatives that patients say worked).

Answering our charges, urologists from the AUA responded that their association’s guidelines represent “… a rigorous and thorough evidence-based processing of peer-reviewed articles.” On the contrary, we believe that “peer review” is just urological opinion, which is influenced by the high income these surgeries provide.

Predictably, Practice Guidelines for treatment of IC/PBS (what urologists are told by the AUA to do) omit some of the best research in urology, including research from the Interstitial Cystitis Data Base Study Group, which concluded that “…no current treatments have a significant impact on symptoms with time.” In other words, multiple trial and error surgeries do not even improve symptoms, let alone deal with the causes. And the expensive, painful treatments recommended by the AUA do not work.

We created the survey because we wanted to know whether standard treatments had helped or harmed women. In addition to learning those things, we also heard from patients who have discovered other causes of their symptoms and found successful, noninvasive alternatives to urological surgeries. We will be posting a document with those results here at the Our Bodies Ourselves website soon.

I am hopeful that research currently under way will offer better solutions for women with IC/BPS. In the meantime, I believe that less-invasive approaches offer a far wiser course.

I want to thank the many doctors, including Dr. Kavaler, Dr. Virginia Sharpe, and Dr. Sharpe’s classic book, Medical Harm; Elena M. Paul, executive director of Volunteer Lawyers for the Arts; the many women who took the time to complete our survey; and those who volunteered their time and expertise to the survey project; Our Bodies Ourselves; and the National Women’s Health Network.